Can you Hear Me Now?

Talking About Hearing Loss

I bet that most of you have never talked with your health care team about hearing loss. I know I didn’t. Hearing loss from CKD, just like kidney disease, is slow and often goes undetected for years. In my case, it started over 30 years ago, and was so minimal that I barely noticed. What I also failed to notice was how reliant I was becoming on lip reading to compensate for the loss.

Back in the 90’s I took advantage of one of those free hearing exams advertised locally. The audiologist explained that my hearing loss, unlike that from general aging, was in a specific section of the ear drum. Think off the ear drum as an S. Most people lose hearing at the top or bottom of the S. With kidney disease, it tends to be in the middle of the S curve. But the hearing loss at that time was not yet profound, so, truthfully, I forgot about it.

Fast forward 15 years and I now have grandkids ranging from 4-12. Like most children, they tend to yell for your attention from anywhere in the house or outside. More and more, I found myself yelling back “If you need something come and tell me”’ and would make them stand front and center, where I could (subconsciously) read their lips. This seemed to be working!

Noticing Hearing Challenges

Of course, there were other signs. I was totally addicted to British television, from murder mysteries to sitcoms. I had to start using closed caption to understand what they were saying. I also found that male voices of a certain pitch were difficult to hear. I could hear my older grandson fine, but the younger one talked like his father, in a monotone. To this day, I rarely heard a word either of them have ever said.

Then I had to see an ENT doctor about some throat issues, and she conducted a hearing test for a baseline. Her findings reinforced the earlier diagnosis. However, she did recommend that a hearing aid was now needed. Unfortunately, the ones that would correct my type of hearing loss were in the $10,000 range at the time. I passed.

Still, I wouldn’t say that my quality of life was affected. Yet.

A few more years passed. I started dialysis, and then went back to work. As an advocate, I would attend conferences, meetings, discussions, and educational sessions. Soon I realized that I was getting frustrated that the speakers were not speaking into the microphones (they were), or speaking clearly. In reality I was unable to hear most of what transpired at these events over the years. Dinners in restaurants became painful. I was completely unable to follow the conversation over the background noise in the restaurant.

The Last Straw

The final straw came when my family started finding my lack of hearing comical. When riding in the back seat of the car, the conversation I heard was very different from what they actually said to each other. My inappropriate comment that then ensued, based on what I THOUGHT I heard, would then result in peals of laughter. I took their humor with grace but realized that I would have to do something. Deep down I was actually starting to feel isolated.

I had another hearing test, which confirmed my suspicions. This time the price of the hearing aid dropped to about $5000. This was still far beyond my budget, living on a fixed income.

As an aside, it does confound me that Medicare will not cover hearing devices for those with profound hearing loss (not necessarily just the usual aging process, but from illness, chronic disease, and accident or injury), especially if it keeps someone from working effectively.

Along comes Covid, and now all those meetings were taking place virtually on Zoom. Once again, I was unable to follow many of the conversations due to my inability to hear the speaker clearly. My frustration mounted. I actually appreciated my families’ humorous approach to my problem – levity always lightens the load!

Hearing Aid Costs

The problem was never about the cosmetic use of a hearing aid. I could care less if people saw it. The problem remained affordability! Recently the FDA approved over the counter use of certain hearing aids. As I suspected, at $300-500, these devices would not work well with my documented hearing loss. But the silver lining to the added competition seemed to be that the overall price of hearing aids was dropping.

I made one more appointment with a new audiologist. Imagine my surprise when she recognized me when I arrived to the appointment. She was the very first audiologist I had visited more than 25 years ago, at a different location. I had come full circle in the last 25 years. Her test simply confirmed all the previous tests. What was exciting was that she totally understood the financial burden, and offered a plan that included the hearing device AND financing, lifetime service, adjustments, and appointments. After comparing this with what my supplemental insurance would cover, I realized it was a bargain and bit the bullet.

A week later, I had 2 tiny earpieces that matched the color of my gray hair. I hardly notice them. Can I say definitively that I hear better? I guess the fact that I actually don’t notice a significant change BUT also don’t find myself as frustrated is a good sign. I went to a conference where I was able to understand several presenters who I had never been able to hear in the past. I went out to dinner in a noisy restaurant and maintained a conversation throughout dinner. Did I mention phone calls? That is the best part. Better than any earbuds, now I can hear all my calls, even those on speakerphone. All this was a very good sign, in my opinion.

Having unlimited adjustments has also helped. The audiologist where I got my device has open office visits M-T-Th-F between 1 and 2pm. Just drop in on a first come basis, and she will see you to adjust the device or even just answer questions. This has been a godsend for the first month, as I notice little adjustments that might be needed. I jot down the issue and drop in the next time I am in her area, and voila!! Fixed. With my work and travel schedule, trying to make and keep appointments is a nightmare. This solution works great.

The real test came when I was with my grandson recently, the younger one who I never could understand. He’s now a 15 year old man-child, and we held a complete conversation, none of which I had to fake!! Here’s to developing that relationship, and much more!

What’s my takeaway? Don’t let the years slip by. Profound hearing loss is far more common than one would think, especially for those of us with CKD. Hearing loss is frustrating for those who have it and for their loved ones. Recent research from Johns Hopkins¹ reveals that hearing loss is also linked with walking problems, falls and even dementia. “Brain scans show us that hearing loss may contribute to a faster rate of atrophy in the brain…and contributes to social isolation. These factors may contribute to dementia.” Can you hear me now? If not, don’t wait. Get tested!